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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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@windwalker Terri, I have the same attitude toward MAC. I don't think about it. Life is short, thinking about it will not stop it from happening and will only take up the energy that we can use to enjoy life, family, friends and this beautiful world. I'm living a active life and have not had any indication that MAC is back. I believe I'm keeping it at bay and will try my best to do that for as long as I can.
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1 ReactionI'll call doc, and yes better because not coughing blood. That is the deal breaker, I mean, that is when I enter crazy land and get terrified!
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1 ReactionHi T...so happy to hear about your results...I think you are so right about a positive attitude, exercise, eating healthy...I think the emotional component is there, as is the fear some days, but it is, as u said, we can’t let it define who we are...and that in itself is a process..
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1 ReactionYay!! Bug free!
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1 ReactionJust catching up on messages. I have never heard of devil’s club, but a quick internet shows that it is new compound isolated from the Pacific Northwest shrub Oplopanax horridus, sometimes called Alaskan ginseng or devil’s club.
For those of you using tinctures, have you mentioned them to your specialist?
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1 Reaction@windwalker Terri thank you for that, You are doing so well, great you do not feel sick anymore, you go girl! I did the wholefoods diet for 6 months but have slipped back into the sugar, time to stop again. My Dr says because I do not have mucus I do not need to do the saline but I am not so sure.
@heathert Can you tell me what the the wholefood diet entails?
@colleenyoung ...Hi Colleen...Devil's Club has been a traditional medicine in British Columbia and the Pacific NorthWest by the indigenous peoples/tribes for a long time. I was happy to find a plant source with some sort of a track record...and all that I read looks promising for M. Avium and TB. Fingers crossed and will report back with any results.
Kate
Hi @gardenernj What I did was to cut out sugar, dairy and gluten, it was really difficult at first but as I got to know the products I could eat it got easier. Basically mainly fruit, veg, nuts, seeds, legumes and no processed foods. I really did feel good but it was very restrictive and I had to be careful that I was missing any groups, ie carbs .
Thanks @alleycatkate. Do you have a link to evidence-based articles about the use of devil's club for NTM or TB? Perhaps you already posted it and I missed it.